Most muscles are affected, including legs, feet, and hands, and those that control swallowing, talking and breathing.  Most patients die of suffocation or other respiratory failure.

ALS does not affect a person’s intellect, vision, hearing or sense of smell and touch.  People affected by this disease are completely aware of what is happening to them at all times.  Ninety percent of all ALS cases are random; only 5-10 percent are genetically linked.  Currently, there is no cure.

ALS is always fatal.  More than 5,500 people in the United States are diagnosed each year, and as many as 30,000 Americans may have the disease at any given time.  Yet, ALS is classified by the National Institutes of Health as an “orphan disease:” one that affects fewer than 200,000 people.  An orphan disease does not get “adopted" by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.  Many research facilities, such as the Robert Packard Center for ALS Research (our primary beneficiary) receive no federal or state funding and depend solely on philanthropy.  That makes efforts like The Bruce Edwards ALS Research Foundation even more critical.

For more information on ALS and updates on current research, please go to www.alscenter.org.

(The above information was provided by the Robert Packard Center for ALS Research at Johns Hopkins University in Baltimore, Maryland.)